On June 28th my youngest son Fulton turned 2, a day we were uncertain we would see a year ago. As mentioned in an earlier post, Fulton has Spinal Muscular Atrophy. When we received this diagnosis just we were under the impression he presented as a Type 1. Most children with Type 1 SMA die before their second birthday. (Since those early days, we've come to realize Fulton does not have this most severe form of SMA and we anticipate more memorable birthdays with him and all our children.)
With the arrival of his toddler years, we are anxiously awaiting his power wheelchair. Our 15 passenger van is equipped with a wheelchair lift and we recently christened (at a Nativity of St. John the Baptist Party) our new deck with handicap ramp. Though somewhat bittersweet, we have rejoiced at these developments; brought about not through government programs, but through the overwhelmingly charitable acts of our friends and family.
Being the parent of a special needs child has opened my eyes painfully wide to the problems inherent in government run social programs. I have always argued here on TNW that charity is best carried out by Christians and neighbors not faceless agencies and government bureaucracies. It is now with personal experience behind me that I more fervently defend my earlier assessment. (The only exception I will make is for the NJ Early Intervention program. So far, it has been a lifeline for me, especially in regards to my social worker. But I will touch on them more in Part II. )
Our experience with other county and state agencies has been nothing but red tape, misdirected calls combined with a continuous waiting game. For example, my son will be receiving a powerwheel chair.This is standard for SMA children his age. Our cozy farmhouse needed major modifications just to get Fulton and his chair through the door. Thankfully, we already had a bedroom and full bath on the first floor. And because of his age, his chair should be small enough to fit through even our old, narrow interior doorways. But we needed at the very least a ramp and new back entrance door. The first agency I was referred to was just reorganized due to budget cuts. I was bumped from one office to another, given mis-information by the second office, re-called the first office after getting help from my social worker and told my request for ramp was submitted and someone would be contacting me. I was informed that once contacted I would get an evaluation of my house and the evaluator would then determine our families needs in regards to renovations and what their office would contribute. Then I could get three estimates and, with the departments approval, have the work done. That was four months ago and I have yet to hear back from them.
Our county ran a program similar to the state one, but, when employed, my husband made too much to qualify. Once he was laid off we inquired again and learned it was at least a four month wait to
initiate the process. And then once the ball was rolling, the county would select our builder and take a lien again our house, so while we would save money now, the total cost would be deducted from the sale of our house.
These are the programs that are in place to help families. Seriously.
I won't even launch into all the issues we're dealing with applying for medical aid. That's a whole separate post.
Thankfully, we had friends and family throw themselves into getting our house ready ASAP. This was crucial because Fulton's chair is arriving in just a few weeks-ahead of schedule even! If we had relied on a government program, Fulton's chair would be sitting unused, for possibility months.
So what about those who don't have the support of friends, family or the community? What of those who can only turn to the government for aid? They're going to have to sit and wait. Either trapped in their homes, unable to get out, or stuck in a hospital or rehab facility. I've been investigating the ramp issue since last winter because I knew Fulton's chair would be ordered this spring or summer. What about those who are effected in a sudden accident? A car accident victim no longer able to walk-his family is expected to plan for home modifications and fill out reams of paperwork while making life or death decisions in the ER? Because otherwise, how will anything be done by the time he's able to come home?
I understand the need for government programs to provide a safety net so no one slips through the cracks but relying on the government for immediate needs seems downright impossible and even dangerous. When first told of all the programs available to help us, I was so relieved, but as I quickly saw the restrictions, limitations, etc, honestly, I panicked. There were programs to help, but that would take to long as mentioned above. Programs that would pay, but we'd have to pay the money up front.-which we've done to modify our van with a wheelchair lift; maxing our card out in the process as we wait for the reimbursement check. And there are programs to help with medical expenses but they require a regular scouring of our financial records and if we make too much one month, sorry, no help or, better yet, whoops, we overpaid, your family owes the government some money back.
Families who come to rely on these programs quickly learn that getting ahead equals less assistance even if getting ahead only means a promotion to night manager at McDonalds. That promotion may bring you more income but not enough to meet the demands of raising a family member with a disability. So one is forced to stay destitute, and live off the system, or become independently wealthy in order to cover all the needs of their family member. Those of us trying to stay middle class and not fall into poverty are totally screwed, to put it mildly. Our family's financial planning in regards to saving for our children's future and our retirement is actually detrimental to obtaining certain types of aid. We will have to exhaust all these savings, ie wipe them out, to become eligible for certain coverage. Because we acted fiscally responsible, the government will not help us. We are not wealthy. Our kids do not have millions set up in a trust fund somewhere. Our 401k will not last us very long, especially given the fact that my husband was just laid off. But rather than helping us to protect those assets, which will make our family less of a burden down the road, we need to burn through them- a scenario familiar to many people before they reach the level of poverty the government deems worthy of assistance.
It is a difficult situation to understand unless you're in it. People do not want to rely on government aid, however the burden of raising a medically needy family member will consume, in time, all your resources. The average middle class family does not have a huge amount of savings and usually has a bit of debt. It is hard to adjust an already tight budget for the unpredictable financial demands that accompany any medical disability.
Once a family comes to rely on the system, it is hard to escape and when you are trapped in a hopeless situation, it is easy to see how some people come to take advantage of the system or feel entitled to its benefits. The system itself is so demeaning, it is easy to be callous and demeaning right back at it. What would be your enticement for improving your situation? It's not simply a matter of picking yourself up by your bootstraps. Medical costs are high. You might be able to save a thousand here or a hundred here but when your child requires an emergency visit that totals tens of thousands of dollars, pinching pennies will not help you. Outside assistance is necessary because, who has tens of thousands of dollars in reserve?
The government does of course, but to them, you are a number or case file and in order to be fair and not have their resources abused you must take a number, wait your turn and follow the government protocol. You might never meet the person who processes your request or set foot in that departments office. To my friends and family, I am Kelly M., mother of Fulton. If I am in need, they will step forward and offer prayers, meals, money or just a shoulder to cry on within hours day or night. I can visit them or they will show up at my door and they give only because they want too and not because I filled out my form properly and waited six months for them to process my request.
How can we as Catholics, and Christians, save people from falling into a hopeless system?
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